Unfiltered Christian Podcast
Welcome to "Unfiltered Christian," a podcast where faith meets authenticity. Join me as we share the raw and real experiences of our Christian journey, navigating the highs and lows of life. Through heartfelt testimonials and candid conversations, we'll explore the challenges and triumphs of living a life of faith. Whether you're struggling or soaring, this podcast aims to uplift, encourage, and remind you that you're never alone in your walk with Christ. Tune in for genuine insights, relatable stories, and a community of believers striving to grow together.
Unfiltered Christian Podcast
Ep - 22 A Mother's Radical Faith, Unexpected Miracles and Child Loss
Serena shares her deeply moving journey of faith through pregnancy, motherhood, and loss after her son was diagnosed with Trisomy 13 (Patau Syndrome), a rare genetic condition.
• Faith and motherhood are intricately woven together in Serena's life, not separate elements to be juggled
• Finding out about her pregnancy with "Jam Jam" was initially a shock, coming just nine months after her previous child
• At the 12-week scan, doctors identified potential issues leading to the diagnosis of full Trisomy 13
• Despite being told 90% of children with this condition die shortly after birth, Serena focused on the 10% chance of survival
• Facing her own health complications from a previous pregnancy that left her in heart failure, Serena still chose to continue the pregnancy
• The remarkable moment when Jam Jam, born with no eyes (bilateral anophthalmia), miraculously opened his eyes at eight months old after Serena's prayer
• Jam Jam lived for five years, defying all medical predictions and touching countless lives with his joy
• The peaceful passing of Jam Jam surrounded by family and music, with Serena experiencing a spiritual awareness of God's presence
• Practical ways Serena honors her son's memory, including planting perennial bulbs at his grave, which she calls his "front door"
• Advice for others on this journey: cherish every moment, catalog memories, connect with supportive communities, and maintain faith in God
For anyone walking through pregnancy complications, a difficult diagnosis, or child loss, remember you're not alone. Connect with others and be honest about your struggles – it's okay not to be okay.
Thank you for Listening
To ask us a question email us @ unfilteredchristian1@gmail.com
Hey guys, welcome back to the Unfiltered Christian Podcast. I'm Cece.
Speaker 2:And.
Speaker 1:I'm Shay and today we have a deeply moving, important conversation. I'm joined by Serena, a wife, a mother of six and two additional blessings, a woman of Elohim. She has walked the journey of faith, love and loss. Her son was diagnosed with correct me, serena trim.
Speaker 1:I want to get this right trisomy 13 also known as patow syndrome, which is a rare genetic condition. This month marks the anniversary of his passing, and serena has graciously agreed to share her testimony how she's navigated through pregnancy, grief and, ultimately, her faith in Elohim throughout it all. Before we begin, I want to issue a gentle trigger warning. In this episode, we'll be discussing child loss, grief and navigating life after loss. If this is a sensitive topic for you, please take care while listening and reach out for support if needed. Our aim today is to offer hope, encouragement, faith-based wisdom for any parent who may be on a similar journey.
Speaker 2:Thank you so much for that. Cece Sister Serena, welcome to the show. Thank you for being with us.
Speaker 3:Oh, thank you so much for having me.
Speaker 2:So my first question for you today is what is it that you love about being a mum?
Speaker 3:Big question. There is so much to love about being a mother. One of the things that I love and also find challenging at the same time is the fact that I am able to see a reflection of who I am through my children. Children are absolutely incredible. They are miracles, I don't know. I think my children are all so different, and even that in itself is just amazing. I have enjoyed watching them grow. I enjoy the challenges that they bring and help me to be a better person. They're fun to be around. They keep me young, definitely that, yeah, I mean. What isn't there to love about children? Um, in fact, one of my favorite sounds in all the world is the sound of children laughing oh my favorite sound and so yeah, children are a blessing.
Speaker 2:They're incredible oh, I love that. Thank you for sharing that. That is so true, honestly, um, I've heard a friend say to me that, um, she's looking forward to hearing the sound of a child being around, or like toys in the house, and I'm thinking are you, are you sure about that? Are you sure you're looking forward to that moment of toys everywhere? Because, trust me, it's gonna drive you crazy. Um, but that is. It is such a blessing, though, to to um, to have children around. I don't think I can imagine now what it would be like to not hear my son in the house, you know, even when he's not here, it's really really strange. Yeah, so I completely agree with you on that. Yeah, so how do you juggle your faith and being a mom?
Speaker 3:Oh, how do I juggle it? I wouldn't necessarily say it's something that I juggle. I think it's very much integral. My faith is very much woven into the fabric of who I am as a mother and as a woman. So I would say that faith is. It's there, it's present, it's evident and it's very much a part of my everyday life being a mother.
Speaker 2:I love that. I really really love that. So it's just, it's really just intertwined in your daily life, along with motherhood, and you know, it's just, it's just a part of everything. As long as being a mother, being a wife, everything is just. Yeah, I really really love that Because I feel like that is that is also the same for myself, so I can definitely relate to that.
Speaker 1:We're now going to talk about Jam Jam. So, ser Serena, can you take us back to when you first found out you were pregnant, and what was that moment like for you?
Speaker 3:um. The moment I found out I was pregnant was not a happy one. Yes, children, but um jam. Jam was for us as a blended family, child number eight.
Speaker 1:OK.
Speaker 3:And we weren't expecting another blessing, and at that particular time in our life, we had just had a child, and he was nine months at the time when we found out that we were pregnant with him, and he too was a surprise and a blessing. Um, so, yeah, two blessings in in a matter of months, but, um, yeah, it was. It was a shock. It was a shock, and I think what, what made it more so of a shock was the fact that my husband had been diagnosed with cancer. He had non-hodgkin's lymphoma some years before, and so we had been told that he was sterile, and he's very much fine with me sharing this. Yeah, we had thought that he was sterile and that we couldn't have any more children, and so when we got pregnant with my son, yeah um, the one before jam jam, that in itself was just like whoa, what's happening here and um.
Speaker 3:And then, when it happened again with jam jam, I mean, fair enough, we perhaps should have known and learned the lesson that it could happen again, but it was still another shock yeah yeah, it wasn't planned.
Speaker 3:It was a surprise for us. Um, it took a little bit of getting used to, to be honest. But, um, once like once, we I know it took maybe a couple of weeks to just get used to the idea, and then it became so exciting and wonderful that we would have the two younger children being able to grow together, thinking about what it would look like days out together, because, like we'd not had children so close together before, or at least I hadn't my husband's beforehand and so I quickly warmed to the idea and became very excited about it.
Speaker 1:That must have been a double blessing, Like wow, Like not once, but twice. Yeah, indeed it just shows you, people, that the Lord always has a final say, no matter what.
Speaker 3:He does.
Speaker 1:Did you receive the news when you were pregnant of his diagnosis? Yes, yes.
Speaker 3:So during my 12-week scan I think it was I had done, sorry, we had the scan and I remember seeing his profile and thinking, oh, looks a bit different. Um, I I kind of liken it to one of the Simpsons, um, but his profile looked very unusual to me and it was something that I had raised with the consultant at the time. And um, he then suggested that we we do the typical bloods that you have. Um our chances of so, you know, typically in pregnancy you'll you'll be screened for trisomy 13 anyway some people are not even aware and um our chances of having a child with trisomy 13 or one of the trisomies, which is trisomy 21, which is Down syndrome, trisomy 18, which is Edwards syndrome, or trisomy 13, which is Patau syndrome.
Speaker 1:So it all comes under the different categories.
Speaker 3:Yeah, yeah, so our chances looked quite high. And what was it? The 12-week scan. Forgive me, my memory is just so I definitely have some brain fog. Um, so, anyway, we had these bloods done and the results came back that our chances were quite high, so we were then offered another scan. That was it, and so we had this other scan and during that time, I noticed that his profile looked very different and unique. So we were then offered an amniocentesis, which is where they put the needle through your abdomen and they draw out a sample of the amniotic fluid and that then taken for testing. And so we we waited.
Speaker 3:It was, I remember the day that we got the results. It was August, the 16th 2017. It was 9 35 am when the telephone rang, and I remember like my husband and I were anticipating these results. It was also my son's 12th birthday at that time, so we had a house filled with 12 year olds and cousins and friends. So the phone rang, we recognized the hospital number, we went into the kitchen and at that point, to be fair, I hadn't actually considered that the results could be positive in my head. Yeah as well, like I'm from a big family, I've got lots of brothers and sisters. There's nobody with any significant disabilities there um nobody in my my parents families that I'm aware of. My grandfather was one of 24.
Speaker 3:Not one person had a disability and so I wasn't overly concerned. However, when that phone rang 9.35 am we are in the kitchen and the voice of the geneticist on the other end of the line. She greets us and she pauses, and then your stomach is just in knots at that point and then she just came up with. I'm really sorry. The results have come back positive for trisomy 13, and the baby you are carrying has full trisomy 13 and what that means is that every cell in his body was affected. So, in essence, trisomy 13 is having an extra copy of chromosome 13 present in every cell of the body. So typically you'll have 23 chromosomes from a male, 23 from a female, 46 in total. Each one is numbered from 1 to 23. His chromosome 13, instead of having the two copies, one from a male, one from a female somewhere somehow there was that extra copy and what that means for children with this condition, it it varies. It varies for for jam, jam.
Speaker 3:He was born with start with the basics, six fingers and six toes on each hand and foot. He was born with a condition called bilateral anophthalmia, which means no eyes. He was born with a condition called bilateral anophthalmia, which means no eyes. He was born with heart defect, biventricular hypertrophy, so he had thickened heart muscles. He had medication resistant epilepsy. He had lots of respiratory issues and later in his life was diagnosed with chronic lung disease.
Speaker 3:He was non-verbal, he wasn't able to eat or drink orally, but he was the most amazing human I have ever had the privilege and honor to meet. He loved music, he didn't complain, he was just a joy to be around. You give him some foil, a foil blanket, and this boy would have the most fun playing with his foil blanket. He had the most magnetic and beautiful laugh. He was just a delight and he defied all the odds against him. So at the point where it was confirmed that he was positive for trisomy 13, we were then invited into the hospital to sit and talk through our options with the geneticist yeah and we were told when you was pregnant.
Speaker 3:This is when I was pregnant, so at this point now, I was approximately 16 weeks pregnant. So we were then told that our choices were to terminate, which you can do at any point in the pregnancy. So up to nine months if you decide that you no longer want to go through with this, because it's a rare chromosome disorder and the prognosis isn't very good. So they say that um 10 percent of children will die within the first few hours of life.
Speaker 3:Those are the statistics that we were working with yeah for me as a woman, a mother of faith, when I heard 10%. In fact, they told me the opposite. They said 90% of children die hours after birth or within the first two months, and so my thinking was ah, so there is a 10% chance that my child won't. And that's what I clung on to.
Speaker 1:Wow. My next question is literally about your faith, like how did your faith in Elohim play a role in how you responded to the diagnosis which you just briefly touched on?
Speaker 3:In every possible way. I could not have gone through the journey and continuing this journey without God like it would have been impossible. It was faith in action every step of the way, especially when you are told so much negativity. And when we Googled SME 13 was, it was scary. It was scary, but God showed up in so many ways.
Speaker 3:So initially I was not sure if going ahead with the pregnancy was the right decision and the reason being. At that point I was also in heart failure. So the pregnancy that I had before I ended up very unwild. During that pregnancy I had what was called an amniotic embolism during labor, so the amniotic fluid had gone up into my lungs and I ended up in intensive care, in surgery. I also had a significant hemorrhage. I was in theater for over nine hours and then, following that, I ended up in heart failure. So there was a lot going on, yeah, and so this was now deemed as a very, very high risk pregnancy and the logic of the consultants was look, you are in heart failure, you almost died during your previous pregnancy, just nine months before. Your body has been through a lot, is going through a lot, and now you're carrying a child with a condition that is life limiting and will not survive.
Speaker 1:Yeah.
Speaker 3:And so it was a lot to weigh up, a lot, but my husband, lot, but my husband, he, he was very supportive, but he also had a very clear stance and that was look, whatever you decide, because it's your body and this is your life, I am there for you, 100 percent. He did say, however, I'm not sure how having a termination will impact our marriage, and so that was a really big thing. Now he wasn't saying it's going to destroy our marriage whatever. I don't know how this will impact us, and so that really hit me as well and something to seriously consider. So he was great and he did lots of research and he connected us to a Facebook group.
Speaker 1:Yeah.
Speaker 3:And in this Facebook group we were able to see that actually there were children in the group who were 5, 6, 7, 20, 16, all various ages, which went right against the odds that we had been given and the statistics that had been documented and shown to us. And so I connected with a family there and she sent me the most beautiful message. So at the time her child was four, I think she was beautiful message. So at the time her child was four, I think she was, and I'd seen like this video with them at a wedding and I was like what, okay, they, they live a full life, like they're able to go out and do fun things, like. It was so far removed from the picture and image that I had in my mind.
Speaker 3:And so she'd sent me this email and it was an email of encouragement and it was words to the effect of God has chosen you to be the mother of this child and every life is valuable and precious. And I always interpret her words as literally hugs off a page. As I read the words, it felt as though her arms were literally wrapped around me, holding me and encouraging me, and it was at that point I was like, okay, god, you've spoken. You've used a complete stranger to tell me exactly what we need to do, and that is to trust you and her words are powerful, exactly.
Speaker 1:You don't really think about that like. You just think about the negativity. Well, not all of us, but that's the first thing that you're getting so much information. Your life is on at risk, yeah, and all these things. But he still sent somebody in a form to be like okay, let your husband channel through to facebook to find somebody to just give you that hug.
Speaker 3:That is so lovely yeah, and, and it really was powerful.
Speaker 3:And I remember three days after the diagnosis I went away with my sister, we went to Barcelona and I literally had time to process yeah and I just remember thinking look God, if this child and we knew it was a boy at that point if our son is going to have a limited life, then I'm going to do everything within my power, according to your will, to give him the best quality life. And it is starting now. So we were in the sea and I'd be splashing the water over my stomach and I'm telling him this is the sea and this is the water, and laying in the sand and everywhere I walked and went, I'm explaining and describing to this unborn child, and I determined to give him the most beautiful and colorful life that we could ever give and allow for him to write his own story, despite what the odds were. So that was, yeah, that's how it all started.
Speaker 2:I'm just blown away over here. I'm just like, wow, I have so much to take away from what you said. Beautiful Serena, thank you for being so candid and honest. That was so, so, so powerful, and I myself is learning details of your story that I did not know before, especially with knowing the fact that you already had your own health issues before finding out you were pregnant.
Speaker 2:There was a lot of things happening there that you could have said you know what this is too much, I can't. Like Lord, I just can't. I can't take on anymore and um, that is a huge testament alone um, of your faith and talking about really relying on the strength of God. I'm talking talking relying on. I feel like we really don't rely on him enough Genuinely. It's like kind of like half-hearted, and you just showed us right there that that was genuine 150% faith that you had Um and what I love as well, that I feel like we do take for granted Um and and I definitely take away from this today is you speaking about um giving him the best quality of life within your stomach?
Speaker 2:Um, yeah, we don't. We don't do that in at all in general, when we find out that we're pregnant and having a baby. We don't actually do that enough, and that is definitely a takeaway for me, um, and because I feel like we should be doing that in general. You know, really feeding into our children from that point, and that's very, very powerful. I love that. Thank you so much for that, um, and I just thought.
Speaker 3:I've gone. Actually, which is really important to me is prayer, and you're right, we don't always do these things in pregnancy, and I hadn't done the same things in my other pregnancies not that I did with with Jam Jam but every single day, multiple times a day, I would pray over him, from the crown of his head to the sole of his feet, and I would name every organ that I could think of.
Speaker 3:So I mean rain, praying over his, his spleen, his heart, his liver, his kidneys, his eyes, his nose, his mouth, his tongue, just everything, praying over his blood as it's flowing through his body, like every single component, every part that I could physically name, I named, and I would pray out loud and I would hold my stomach and plead the blood of Jesus over this child.
Speaker 1:Amen.
Speaker 2:Amen. I didn't know I needed my notebook for this interview. I need my pen and paper. I need to write these things down, honey, because this is gold, this is amazing. Oh my gosh, oh Lord.
Speaker 2:I pray that whoever needs to hear this right now will start doing this. This is something I will be telling every single friend of mine now, and if anyone comes to tell me they're pregnant, please start praying over every part of it, because it's so powerful. You know, we're surrounded by so much sin, especially unseen. You know the spiritual world. We literally cannot see what's going on, the battles, that, what, what, um, you know god is protecting us from, and so that innocent little being inside of you, they they're in need of of us to be that mouthpiece for them, and so that is so, so powerful. Um, oh gosh. Oh, got me emotional over here. I love that. I really, really love that. I did pray over my son when I was pregnant, but, oh, every organ, yes, I will be doing that for baby number, whichever, for sure, okay. So, in saying that, you already touched on prayer, but were there any scriptures that you leaned on that strengthened you during pregnancy, even during that time frame?
Speaker 3:There was so many. Actually, in all honesty, I can't even think of any one particular scripture other than proverbs 3, verses 5 to 6. Trust in the lord with all thine heart and lean not unto thine own understanding in all your ways. Acknowledge him and he will direct your paths. And for me, I had no idea of what was to come. Every aspect of this journey was unknown, and so I had to trust in the Lord with all my heart. I had to rely on him to direct my paths because I had no idea. You know, sometimes, when we do have that foresight, when we know the journey, like, we lean less on God because, like we've got this, haven't we? But in a situation where everything, everything is at stake, everything is unknown, like for me, there was no other way, there was no other choice, there was no other person, no one to lean, no consultant, no doctor, no midwife, not even my husband, like it had to be, could only be our heavenly father. That was it very true, amen.
Speaker 2:Thank you for that. Um. So how did you prepare yourself mentally and emotionally, and spiritually as well, for the journey ahead?
Speaker 3:um, I don't know if I, if I was prepared, I don't know if I was prepared for the journey ahead.
Speaker 3:What I did do is, again, it so cliche, but it just goes back Prayer and just stepping out in faith. It's like Lord, I don't know what's going to happen, I don't know if my child is going to be alive tomorrow, but I trust you and it was a mindset of no matter what happens. I'm going to trust you. I'm going to trust that this is the plan and I knew that ultimately there is a long-term plan, like God knows the plans he has for us, and it's plans for us to prosper, plans for our hope and an expected end for us. And it's plans for us to prosper, plans for our hope and an expected end. I always knew that if my son was to die in utero, there will be a time where we we will be reunited and we will be tracing and God will give us our son back again. I knew that if he died after birth, that it's the same thing. There's that promise. You know, that's the only thing that I was certain of is that promise to come.
Speaker 3:Everything else in between we had no idea about. I just I can't really say that we did anything to prepare. I stopped looking at Google, I connected with the community. I would see other children and reach out to other families. But, most importantly, because this was our journey and their journey is their journey, we had to just rely on God. I had to rely on God and that was it. There was nothing else. There was nothing else.
Speaker 2:Amen, I love that. So let's talk about the life of your son. I love that. So let's talk about the life of your son.
Speaker 3:What were some of the most precious moments that you had with him? I think it's really difficult as well, because every single moment, every moment was precious. I remember when he was born he was born via caesarean section and I just remember him being held over me. I got to give him a cuddle, I was able to smell him, to feel his hairbrush against my cheek and I literally tried to catalogue everything in my mind, to hold on to the smell, to hold on to the touch, the feeling of his hair, and then he was just quickly whisked away. But that moment of knowing we've made it through the first hurdle, you've made it through the birth and you are here.
Speaker 3:And it was a fight for him from the very outset, because he wasn't breathing. He ended up in intensive care and every moment was a fight and a struggle and we went through so much. But precious moments, every day, every day was absolutely precious, and I'm not just saying that Every single day that we had, I made it count because we just didn't know what tomorrow would hold. Every day, I mean, we spent a lot of time in hospital, but literally the day we'd be discharged and our nurses would just laugh at us all the time, the day he was discharged, and it may sound crazy, but we would do something, even if it was as simple as go for a walk in the park, but we would do something. Every moment was precious.
Speaker 1:Every moment amen thank you for being vulnerable, as this month marks the anniversary of your son's passing. How have you been processing this season?
Speaker 3:I haven't. I will be very honest and transparent. This is the first moment that I have sat and actually spoken about him. For a very long time, I have pushed everything aside and I just keep busy, and I know it isn't the healthiest way to deal with things, but it is where I'm at right now because it's hard, it's hard. He was the person that I spent the most time with in all this world, even within the five years. We were together pretty much all of the time and he relied on me for everything, because he could do nothing for himself, absolutely nothing. He couldn't change himself. He couldn't feed himself. He couldn't feed himself. He couldn't even reach to grab a toy that he wanted. He wasn't able to see. That in itself is a whole other miracle, because god gave my son eyes. He was born with no eyes, but on the 20th of August 2018, god gave my son eyes. Wow, my son and I were walking to the GP surgery and prior to this day, he had been tested at two major hospitals.
Speaker 1:Yeah.
Speaker 3:Both of their findings were exactly the same. So the first one told us bilateral anathomia. We wanted a second opinion. It just didn't. I didn't understand it. I needed a second opinion, like they had to have been wrong, but no, their findings were exactly the same as the first hospital, and so this was something I really struggled with, really struggled with, and I remember on this morning, august the 20th 2018, we're walking to the GP and I broke down like literally broke down in the street, pushing his pushchair, crying out to God, saying Lord, please, if you are real, if you are there, if you are the creator of this world, which I know you are speak the words. Let Jamiah Lee have eyes. Speak the words. Lord, you created the heavens and the earth. You said. Let there be light. You spoke the sun, the stars. And I got to the surgery doors and we'd always been told never prise his eyelids open because, we could introduce infection that could then affect his brain.
Speaker 3:So I never did. I never did. I followed everything they said. So we sat down in the surgery and, I kid you, not within less than 15 minutes, my son opened one eye for the very first time in his life, to eight months. Yeah, that day, every single photo, his eyes are sealed shut. Everyone in the hospital, or his consultants, the nurses, everyone knew this was the child with no eyes. Yeah, yet on that day, god heard this prayer and miracles still happen today. They happen today and I've seen it and experienced it. This boy had eyes later and I remember at the, at that time, I thought I was going crazy, like I'm so desperate for this. Is this my imagination? Is this like what's going on? There was a lady next to me, a jamaican lady. I'm like, excuse me, excuse me, like, can you see? Like has he got eyes? Can you see an?
Speaker 1:eye, can you, can you, yeah, yeah, like you're like wow, and and and in my girl two eyes, little dish.
Speaker 3:No, she was speaking prophecy. Hey, lovely boy opened the second eye. Now when I back to the ophthalmologist and I questioned them, like what has gone on? Did you get this wrong? You told me my son had no eyes. You did your tests and everything else and you told me he had no eyes were you. Nobody can give me an answer. They told me they were not wrong. That's what their findings concluded.
Speaker 3:They cannot understand what has happened here yeah and we were told that eyes cannot grow after birth. They don't grow after birth, but yet this child had eyes. Now his eyes were very small, very tiny, and he had a very disorganized um eye yeah but praise be to god. He was able to respond to light. He was able to respond to the color red and the color white do you notice?
Speaker 1:I'm still you've got me shocked on just that whole bit. Like you had faith, like when the bible says if you have faith, like a mustard seed. Your faith was more than that, like wow, and he just in 15 minutes did it, he did it, he did.
Speaker 3:I mean there, there were so many miracles that happened even prior to that, because he, we were told he was deaf and god gave this child hearing. We were told that he would not live past utero. He lived up to five years. We were told so many things about this boy and yet god just showed us, time after time after time, that he's got this child in the palm of his hands. He was our little miracle boy. He really was.
Speaker 1:During the hardest times, whilst Jam Jam was alive and, as we heard, you've even answered my question. But I just have to ask this question when Jam Jam was alive, because obviously behind the scenes, when you're at home alone, there's so many thoughts going through your head. How did you find comfort?
Speaker 3:in Elohim. It's so interesting because, being home alone, together, number one, I always knew God was with us, always knew God was with us. How did I find comfort in him? Through his word. God was with us. How did I find comfort in him through his word, through the people that he brought into our lives, like God handpicked, every single person in Jam Jam's team and I believe that with every fiber of my body yeah.
Speaker 3:God handpicked and selected people and those who were not supposed to be there, who were appointed but not by god, he removed them. He showed up in so many ways, so many ways, like jam jam, when I say this boy was loved. He was loved. He had many birthdays in hospital. For his fifth birthday, they gave us the entire back end of a whole ward. They hired entertainers. They allowed us to bring our family I'm talking, there was about 50 of us Now in hospitals. You know it's two people allowed.
Speaker 1:Yeah, yeah, yeah.
Speaker 3:People to bring in food, drink, cakes, everything. He had the greatest consultant. He had just the best team who really advocated for him. They cared for him and it wasn't just a job, and I can confidently say that and even though we had battles because we did, there were differences in opinion, there was differences in where I would say but God has told me this, and it was well. We see something else. We, if we know you have your faith, serena, but this is what the evidence says.
Speaker 3:And I would say but god has told me this yeah and I know that my god is not gonna fail me yeah and so he will forsake me.
Speaker 3:Yes, exactly so. There was so much like God. He was just present in every single moment, even in Jam Jam's death, every single moment. I used to say to the staff that, like I was always told throughout his life, jam Jam's dying, jam Jam's dying, jam Jam's dying and it would really get on my nerves. I'm not going to lie. And so I always said to them look, whenever that time is to come, I know my God will prepare me for that, and that has not happened. Now. God will prepare me, and he did.
Speaker 3:That very day, sir Jam Jam had been in hospital for 10 months and it was a long, difficult journey. He went through so much, so much, but we were able to bring him home after 10 months on what was called a palliative pathway. So he was no longer, and this was an agreement by the hospital and us that we did not want him to go back into intensive care, and so the plan was, if he was to get better and do well over a three month period, then that would be reviewed and full intervention could possibly be restored of March 2023 and we'd actually taken him on holiday to um Center Parks. This was the exact date. Anyway, we'd gone on a Wednesday, we returned on the Friday and then Jam Jam the following Wednesday. At this point, sorry, he was on a ventilator. He was ventilator dependent so he wasn't able to breathe on his own and I remember at 5.30 that morning he had stopped breathing. So he had night nurses and in our home we had alarms where the nurse could just press the alarm, it would make a sound throughout the house and everybody would just come running. Nurse could just press the alarm, it would make a sound throughout the house and everybody would just come running. At 5.30, the alarm went off, came running. We resuscitated him. It was really difficult to bring him back but we did.
Speaker 3:Same thing again happened at 11.30 that day and then at 1.30. And I remember during the day because it was like our most trusted nurse who was on the day shift I remember thinking, right, it's her, let me go and do a few things in the house. I remember cleaning up in the kitchen. I was mopping and the Holy Spirit said to me stop, go and spend time with Jam Jam. And I was like, huh, okay, lord, put everything down and I went into Jam Jam's room with the nurse and I just remember laying with him, we were singing, playing all his favorite songs, reading, and then at 1 30, the same thing happened again and this time it was really difficult to resuscitate him and I remember saying to the nurse stop. So the process that was used and and I don't know if it's okay to go for it we have like what was called a bag yeah a bag valve mask.
Speaker 3:So you put the the mask over and you squeeze the pump and it administers breaths for him. And this wasn't working. So I kind of pushed that aside and was just giving him rescue breaths mouth to mouth, and even that wasn't working. So I said to the's just stop, stop, I don't want any more of this. Let's put him back on his ventilator, let's see what he does. So we called our palliative care team. We let them know what was happening and at that point they said Serena, we think Jam Jam's trying to tell us something. We think this is it, like, call your husband. So I called my husband. He came home and even when they said that, like I kind of rolled my eyes. It didn't hit me. It was like, yeah, whatever, like God has not told me, god has not prepared me. So my husband has now arrived home and Jam Jam is in my arms. His head is on my left, my left, cradled in between my left arm and I'm holding him.
Speaker 3:And I just remember there was this mist that came all around. And I remember saying to Darren my husband like is the diffuser on? Because we always had diffusers on lavender and lovely essential oils, frankincense, etc. And he was saying, no, the diffuser isn't on. So I turned my head and I looked at the diffuser and I could see, oh, it isn't on. So where's the mist coming from? And he was like what mist? And I said, said, babe, the mist is right there, like it's here, can't you see it? And he was like what are you talking about? What mist? And I was getting frustrated, like there it's in front of us, the mist, and as clear as like if you hold your hand up and you look at your hand, as clear as that is to you. That's how it was to me.
Speaker 3:And at that point it hit me and I said, god, is this you preparing me, is this you? And I just felt and heard the conviction yes, it's time. And so I prayed and I said, god, please help me, tell me what to do, tell me everything I need to do so that, so that Jam Jam isn't afraid, so that he's calm, he isn't scared. Tell me everything I need to do. And so the Lord said to me just lay down with him, get his bean bag. And he had this huge red bean bag. And so we moved his bed to one side and we transferred the ventilator and everything over to where the bean bag was, and I laid down with Jam Jam and I just kept praying Lord, what do I do next? What do I do next?
Speaker 3:So he played all the songs that Jam Jam loved Jaira, goodness of God, all these songs that he just absolutely loved. And then we picked up his book. So I had written a children's book called Jam Jam Can, and we read him his story and, little by little, the room was being filled with his siblings and family friends. The room was being filled with his siblings and family friends, and the palliative care team had arrived and we were advised to take him off the ventilator. We could see that his breaths were becoming less and less, but his heart rate was stable, it was steady, and so this was a bit conflicting and confusing, like what's happening here. But we just kept praying, we kept singing and then that was it. That was it. We said goodbye to him at 5.50 on Wednesday.
Speaker 1:Surrounded by love.
Speaker 3:The 29th of March and he was surrounded yes, he was surrounded by so much love, the presence of God. I know Angels were there with us. I know that and it sounds so bizarre, but the nurses that were present, they have said that it was the most beautiful death they've ever experienced and for me it's such an oxymoron. How can death, how can death, be beautiful? But these are their words. But everything was calm, he wasn't panicked and we know that because his heart rate was so steady and his heart rate was always the indicator for us when something was wrong.
Speaker 3:I just believe that he was ushered into the presence of God, that his spirit went back to God, and I have that hope and that firm assurance that when that trumpet sounds and the dead in Christ rise first, jam Jam is going to be there, that when that trumpet sounds and the dead in Christ rise first, jam Jam is going to be there.
Speaker 3:And I have this vision of an angel just holding him and bringing him, presenting him to me, and we are just going to be reunited and laughing and hugging, and he's going to talk and his voice for the first time, and he's going to see and he'll be so excited. Mom, look at this, look at that mom, that's what you look like like. I just have this, this beautiful picture in my mind how this, this boy, is going to be, and this is why every day now, like life, has a very different outlook for me. Now I'm checking myself every day because there is nothing, nothing is going to stop me from being reunited with my son Nothing, nothing. And I love God and I love Jesus and I want to see, I want to meet Jesus, but I've got to be honest, I want to see my son more.
Speaker 2:But it's the truth. I just want to see my son.
Speaker 1:Sorry, the amazing thing is is that, like we'll, we'll all be made anew, so he might even come running to you and saying, mom, look everything you know, that day is going to be so amazing and your, your testimony, is so powerful, powerful, yeah, powerful. Like me, who has little faith, like your faith has triumphed when nobody's, when people say that you cannot, god can and yeah, he's in that number and you be with him. You will definitely be with him.
Speaker 3:And do you know what is so beautiful Is that Jam Jam is still very much present in everything.
Speaker 3:for me, I know he's physically not here yeah, but the work that I do with other families. He, his story, has impacted me so much that I just want to give and I am able to really empathize and understand and to listen and to hear people in their own journey, and that's the gift that he's given to me. The fact that once upon a time I may have been someone to maybe hold grudges or get angry, upset or nothing in this world matters anymore, nothing, nothing, because all I want to do is honor God, be in his kingdom and be reunited with the gift that he gave to not just to me, because I call him our jam jam, because he was so many peoples he really was. He had nurses who were mothers to him, his siblings who were mothers and fathers, and so many people so many jam jam.
Speaker 3:He did. The day he left hospital there was a row of people on either side doctors, nurses, so many different people and as we walked through standing ovation for this boy the paramedic that brought us home he was like what's going on here? He said I've never seen anything like this. It's like famous. I know he's just jam jam, but that's the impact that he had on so many people. I'm talking the cleaners, the porters, everyone knew this boy everyone.
Speaker 2:Everyone knew him. What would you say to a mother who is struggling with guilt, anger or questioning Elohim after the loss of a child?
Speaker 3:You know, that's a very natural and human response and I have friends in that position and the best thing that I can do is just support them through their journey. I think grief is very much personal and how we deal with it, how we process it, how we project towards our father is very much personal and individual. I think I guess one of the challenges that we have is we understand that God is a perfect God and he is all omnipotent. Like he gave Jam Jam eyes, he could have also saved Jam Jam. You know, I also recognize that there is an enemy and there is sin in this world. And the one thing that I try to reassure my friends with and you have to be so careful, because not everyone is ready to receive this In the midst of their pain, like you've got a wall up, you don't want to hear it, but I truly believe that because God is so loving, he has given man free will, he has given man choice, he is a loving and caring God and he has an ultimate plan of salvation for us. So this is not the end. It isn't the end. There is a great, a great hope that we have. Like God is so amazing that he knew all of this was going to happen.
Speaker 3:And even in my own personal journey, you know, there are times where people may think why me? I've recognized I am not any special, any different to anyone else. We've all got our different journeys, our different trials, our different struggles. But it's how we choose to navigate that is key and important and for me, I always found joy in our journey. It was tough, like having to resuscitate your child 13 times a day, which is what happened on one day. It is depleting and it's draining and it's tough and it's difficult, but I gave God thanks every time we got through that. Every time we got through, it was like thank you, god for taking us through and the mindset I have now.
Speaker 3:I remember there was a day where I stood at my son's grave and I said thank you, jesus. He will never have another seizure again. You've healed him in Jesus name. Thank you, thank you, thank you that he'll have another needle, he won't have another injection, he won't need to have food through his tummy again, he won't need to have any hospital admissions again, no more tubes, like he is free. He is free, he's been released from that and I thank God for that. I also thank God for the fact that we had him in our lives because he was. I've said that he was a gift so many times and he really was, and so I am grateful for the gift of Jam Jam, I'm grateful for who he was. Sometimes I think, what would it have been like if, if, like, if he was neurotypical, what would have been? And then I think of that it's such a quandary like if he was neurotypical, then so many other things would just not have happened. Who I am today, speaking to you today, would just not have happened.
Speaker 2:Who?
Speaker 3:I am today speaking to you today, would just not have happened. So we just have to trust God, trust the process and trust that his plan of salvation is solid. It is real, it is true. God cannot lie and his word tells us. His word tells us, his word tells us, and as people of faith, it's a lot easier to deal with because you can spend time in your word. You have that hope.
Speaker 3:When you don't have faith, it's a very different ball game and people do have, uh, this really challenging of God. But God sent his only son to die for us, and I remember once I was battling with God shortly after my son died and I was saying, yeah, but God, it was different from you. Your son died for three days. My son's been gone for how long you got your son back and you know what God said to me. He said Serena, jam, jam was my son too. Every one of his children that have passed, every one of our loved ones. They are god's children too, and this is why he has that plan of salvation, because he wants to be reunited with every one of us and we're not exempt.
Speaker 3:There are things in life. When I hear about situations that other people have gone through, I think to myself god, thank you for my journey, because I would never have been able to handle theirs. He's a God of grace and throughout our journey he's taken us through every step of the way, and so my encouragement to others is to cling on, cling on, claim every word, claim every scripture, know that he cannot lie, he is God. Every word is truth and we have to believe. And there's so much evidence that god exists, like for me, it just doesn't. Nothing else makes sense. Nothing else makes sense.
Speaker 3:I think of like big bang, like when there's a bang, isn't that destruction? Isn't that like things being destroyed? Yeah, perfection and harmony. It just doesn't make sense. The fact that our bodies are so intricately detailed that man cannot even fathom or fully understand it. Like that's got, that is not a coincidence or accident, that is not an explosion, god the creator. So it's these things that really challenge me, and they increase and enhance my faith, because there's just no other way. To me, nothing else makes sense. It just doesn't make sense. And so I encourage people to hold on to his word, to keep going and also to just look for those places where you can give thanks and have gratitude, and I think that's something that's really kept me even in his death.
Speaker 2:Amen, amen really kept me even in his death. Amen, amen um.
Speaker 3:How can family, friends, family friends and the church better support mothers or parents who are walking through this journey. Oh, the things you say. For one, I've had people say to me isn't it time you get over it now? It's time to move on? You've got to start making a life for yourself. No, really, yeah, that's harsh, that's horrible. I will never get over it. He is my son, a huge part of my life. I will never get over it. I will learn to live through it. I will build experiences around this pain.
Speaker 2:But it right ways be there.
Speaker 3:When people say we don't grieve like the world grieves, I hear that, but grief is grief and grief is pain and it's agony for anyone who's lost a loved one. So, yes, the difference is we have that hope in Jesus, which is why we don't grieve as the world grieves. But that doesn't mean we are not to be in tune with our emotions. It doesn't mean we should not feel the pain, because this is not what God designed us for.
Speaker 3:It's part of the plan, and so grief is very real and it's painful. I've also had people say things like it's gone out of my head, he's in a better place. That one, that one really hurts, and it hurts because I know where my son's body is and it's in a grave.
Speaker 2:Right.
Speaker 3:He's under the earth in a grave. He's not in a better place. The best place that he could be is in my arms. That's the better place to me. So I think, when we are dealing with people who are grieving, I think it's so important that we listen and be led by them to really hear and ask how would you like me to support you? We shouldn't make assumptions, because how I deal with grief and my outlook is going to be very different to somebody else's, so it's taking that time to ask that individual how can I best support you? What do you need from me, rather than us making assumptions, and rather than us throwing those cliches out there.
Speaker 3:Even scripture we don't grieve like the world grieves, you know, because grief is tough, and when you're grieving the loss of a child, a child that you've carried for nine months, a child that you have loved, and to have that person just disappear, it's agony, and I think for us it's. In addition to the loss of Jam Jam, there is the loss of the community around him. There was the loss of all his medical equipment, things that we were just very much used to. I call them the deletions, and so for us there were so many deletions his bed and this and that, and there was so much. So we lose him, then we lose everything else. So I think it is really important to just speak to people and see how them as a person, as an individual, want to be supported.
Speaker 1:Thank you For parents who receive a life altering diagnosis for their child. What advice would you give them?
Speaker 3:advice would you give them. Best advice I can give is one you have to do what's right for you. You have to do what's right for you. Everyone's journey is different. I am not someone who is at all judgmental. Some people make the choice to terminate and that is right for them. For me personally, my choice was for my son to write his own story and for us to stand in faith and trust God through the process. I think it's a life-changing, life-altering decision when you have a child with complex needs. But for me, I'd never make a different decision because we gained far more than we lost, far more, and we have that hope. I have the hope that because he was here, we're going to see him again Like if he wasn't here. I wouldn't have that. But ultimately, I think it's very much an individual choice and I would say you do that prayerfully, prayerfully, trusting God every step of the way.
Speaker 1:What are some of the practical ways to honour the memory of Jam Jam while you're continuing to heal?
Speaker 3:Oh, that's a lovely question. So many ways, I think. For example, at his grave we plant bulbs, and I always plant perennials so they die, but they come back and that signifies what God is going to do. I call his grave his front door, and for me that is another reminder that this is the place he's going to come forth from. It's a front door. It's closed right now, but it's going to open because that's what doors do. Um, we talk about him every day, every day, like the room I'm sitting in. We call it jam. He's just not forgotten about. He's not a word that we don't speak of.
Speaker 3:You know, he's literally part of our conversations day to day, and it's very natural yeah and so, yes, we do the the unique things on on, like the anniversary anniversaries of his death. Last year, we went to the hospital, we bought gifts for other children, cupcakes for staff. They have a special book with an inscription in it for him, and so it's nice to do that. We let off lanterns last year. It didn't go very well, it was a bit of a disaster, but we laughed and we laughed and we laughed. It was, it was fun. Yeah, that was a fun moment planting the bulbs and seeing them grow and seeing the flowers. And then I get excited oh, my goodness, there's another flower, there's another flower. And so for me, those reminders are just so powerful. They're so powerful. Yeah, he's very much remembered all the time and he's always in my thoughts. Always I could be having conversations with people and he's there in my mind all the time.
Speaker 1:I love that for you. My last question is if you could say one thing to a mother who is in the middle of this storm right now, what would it be?
Speaker 3:Cherish every moment, every moment, catalog every moment, like I have over 8 000 photos and video footage of jam jam and every day I scroll through my phone and I type his name in scroll, scroll, scroll, stop and see what that memory is. And then it's like, oh, remember this day and cataloging moments, just making the most of every moment, like we were told so many we're not going to do this, he can't do that, he can't do this and he can't do that. But for us that was do you know what? This is a person? He's not his diagnosis, he is a human, and so we gave him rich, valuable experiences. Jam jam went everywhere and I was proud to be his mom from museums, farms, to zoos, retreats, like everything, boat rides, just everywhere.
Speaker 3:We did so much of him. I used to say to him Jam, jam, you're going to be on the chore chart. You stay there. As soon as you're old enough, you are going on that chore chart. I love that. We did mess play, we sang, we just, you know, we just enjoyed each moment. Yeah, for anyone that's going through this and it's a tough journey and I really appreciate that everyone has a different mindset, different view, and how I chose to handle it may not be how somebody else will- yeah.
Speaker 3:But also just remembering that it's okay not to be okay Like seek out and reach community. Coming together with other people is so valuable. I drew the most strength from other parents, and it wasn't just parents with children with trisomy 13. Other parents who had disabled children, of different ages, different conditions, but there was that commonality that our children had a disability. And I'm still friends, very good friends, with a number of those people today. So, even though my son isn't here and their children are, we are still very much united. So you don't have to be alone. Reach and connect. Connect and also be honest. If you are not coping and you are struggling, speak up about it, because we we're not superhuman yeah you know, we are not superhuman and it is okay not to be okay.
Speaker 3:It really is. And there were moments where I I had to tap out and it's not that I was leaving or doing something because I didn't, I didn't want to be with my son or whatever. I needed that space to refuel, replenish and come back even stronger.
Speaker 3:So, there were times where I would go out with my friends and, yes, I was worried I'd be checking the camera and find out what's going on, but I tried not to have guilt for that. Yeah, I understood the value that if I'm not good, how can I then be good for my son? Yeah, you know so. Self-care is so important, it's so important. I made sure that I had massages. I'd have a friend come and I'll get my massages.
Speaker 3:You know, there were times where I took my other son on holiday, like and for me it was always a faith movement. It was like God, I know you've got him, I know you've got Jam Jam. Yeah, I'm leaving him in your care, not just the care of his dad and the nurses and everyone else, but I'm leaving him in your hands, you know. So I think it's really important that anyone in any situation with a child, complex needs, disabilities, where it is tough, and I appreciate it, but you have to look after you. You have to. It's just like the whole aeroplane scenario. You know you put your own oxygen mask on first.
Speaker 1:Yeah, yeah yeah.
Speaker 3:And that's it you know, you have to. You have to, and don't feel bad or guilty about it. You have to.
Speaker 1:Yeah, because if you're not 100%. You can't be 100% for the person you're looking after.
Speaker 1:Exactly yeah, because if you're not 100, you can't be 100 for the person you're looking after exactly, but always stay connected to god like he is the biggest fuel he really is. Yeah well, serena, thank you so so much for being so vulnerable and sharing your heart with us today, the fact that you haven't spoken about in so much detail for a long time. So, thank you so much for sharing your journey, your faith, your resilience, your love, and you're encouraged to help other mothers, parents or guardians and caregivers around the world.
Speaker 3:I pray so and thank you for the space and the opportunity, and I do pray that that others will be encouraged and will be blessed and will find some strength and, most of all, will just remember who God is in their journey.
Speaker 2:I didn't realize you wrote jam Jam Can during the time that Jam Jam was here with us. Yes, so what actually brought that on? How did that come about?
Speaker 3:It's so bizarre. One day I was sitting with Jam Jam in his room and the words literally just came to me and I thought I better write this down. And it just sounds like so weird. There was no plan, there was nothing.
Speaker 3:The words came and I wrote them down wow and then I thought, ah, this could be a children's book. There was actually something that did trigger it, and I didn't write it at that particular time, but I remember a child had seen him and was quite appalled by him. So he looked at Jam Jam. He's like oh, why does he look like that? Why is his eyes like that? And so I had to explain to that child. Look, I introduced him this is Jam Jam, like he has a disability, he's different, etc. Etc. Etc, etc.
Speaker 3:And by the end of that conversation he was a lot more kinder, a lot more gentler, and so it was in my head that I did want to write a book, because I did want to break down those unconscious bias that people held and those negative connotations and thoughts that people had, and and even the, the, I guess, the openness of children. I just needed to break down those barriers, to know that it's okay to be different, that children need to know that, and so that was the initial catalyst. But the words literally came just one day, sitting with Jam Jam, and it came. I guess that was God.
Speaker 1:Is it still available and where can people purchase, or do you have any links or anything that you would like to share that could be available to other parents?
Speaker 3:It is still available. It's on Amazon. Oh yes, it is still available. It's on amazon. It's called jam jam can, written by serena pascal and illustrated by zinovia grant who is totally awesome we're working on revising the book, so thinking of doing a second edition edition, but that is not something that is out yet.
Speaker 3:Um, yeah, that's a work in progress, but the original book it's a beautiful book. It's empowering, it's encouraging. There's the strong message of I can. So when others think you fail. In the book it says when others thought he'd fail, jam jam said I can.
Speaker 2:So yeah, and serena also has her instagram, mom of faith, as well. I'll also put that in there. And she does have her website as well, um, momoffaithcom. Yeah, you can always go in there also. Yeah, thank you, and I'm gonna say a prayer and we're just gonna end. Thank you so, dear blessed and wonderful father.
Speaker 2:I just, I really just want to give you praises and just lift you up and say hallelujah and thank you so much for this moment, for this time, for this safe space that we were able to share with Serena. Lord, thank you so much for her, thank you, lord, for her vulnerability and thank you, lord, for blessing us with Jam Jam, lord, so that we're able to sit here right now and speak about him and the testament that he was for so many and he continues to be for so many. Heavenly Father, we, lord in heaven, for sharing Jam Jam with the world. Lord, so that he can inspire so many, so that we will continue to be talking about him and how much he has inspired and taught us. Gracious God, father, lord in heaven, we just want to pray for anyone right now who is listening, who is being maybe triggered by this moment. Father, lord, be with them right now and comfort them. Gracious God, and even Father Lord, be with Serena right now, lord in heaven, as she continues to go through reflecting on moments with Jam Jam and as his death anniversary is approaching. Lord, we just pray that you'll be with her and be with her family and just comfort them at this time, heavenly Father Lord, and continue to comfort them. Father Lord, continue to be that hug and care for them and just place your Holy Spirit within them.
Speaker 2:Father Lord in heaven and gracious God in heaven, I just pray for others, lord, who are going through this time of grief, this time of hurt, or who are dealing with a child with disability, or even maybe an adult or caring for someone right now. And, lord, I'm just asking you to please strengthen them, father Lord, in those days and moments of weakness or tiredness or exhaustion or just not knowing what to do, father God, bless them with the knowledge, bless them with the care, bless them with the support that they need. Father Lord in heaven, and continue to bless them with their village. Father Lord in heaven, it's so important.
Speaker 2:Lord, you did not want us to be on our own and so, father God, send those people into their lives that can be there for them and comfort them and just thank you so much, lord, for this time. Once again, we appreciate you, we love you, lord, for all that you're doing, lord, and thank you so much, heavenly Father, lord, that even in this sinful world you are still doing miracles. Is it there anything in us, lord, once again hindering or stopping these prayers from reaching you? May it please be removed In your blessed Son's name as we pray amen, amen.
Speaker 3:Thank you so much. Thank you, thank you.
Speaker 2:You're very welcome. Thank you, you are welcome, and God bless you both.